Wednesday, November 22, 2017

Happy No-Thanksgiving!

Well, this year I’m in no mood for Thanksgiving. Quite frankly, the state of my life, health, and the world in general has me feeling grumpier than a starving vegan in a steakhouse. Between being increasingly decimated by a progressively crippling disease, forced to witness a nation and a planet gone mad and suffering through the worst fantasy football season I’ve had in over a decade, I find myself more inclined this year to say “no thanks” than “thanks.” So, I’ve decided to invent my own little holiday: No-Thanksgiving, a day when one can feel free to share their disdain and disgust with freedom and pride.

No-Thanksgiving coincides precisely with Thanksgiving, so those who find themselves forced this Thursday to sit around a table of people gushing with gratitude while feeling only varying shades of repulsion are hereby granted license to let loose with a bile laced torrent of grievances when it comes your turn to speak. You’ll feel a whole lot better, and you can tell the others at the table – as they look at you horrified in slack-jawed bewilderment – to pull up their big boy pants and just carve the freaking bird. And then you must swallow some air and unceremoniously burp out a hearty “Happy No-Thanksgiving!”. A burped “Happy No-Thanksgiving” is the only mandatory ritual required of those celebrating this new holiday.

So, what am I especially not thankful for this year? Oh, let the litany begin…

I am aghast at the list of famous and powerful men who have proved to be harassers and sexual abusers of women, a register that seems to grow daily like an ignored melanoma. Granted, some of the grievances committed are worse than others – in my mind, there is a world of difference between cupping someone’s butt and sexually touching a 14-year-old – but none can be considered acceptable behavior. These ongoing revelations have led me to ponder questions I never imagined I’d formulate, such as how much satisfaction can there be in forcing somebody to watch you masturbate? Back when I was healthy and single, the thrill of finding a new partner lay largely in the fact that she actually liked me. When introduced to a beautiful woman I never once had the slightest urge to corner her in a private space with the intent of forcing her to watch me pull out my Wee Willie Banjo and start strumming a tune. Definitely not my idea of making beautiful music together. The fact that women subjected to such spectacle didn’t immediately projectile vomit on the men in question is testament to the strength of the female gender. A pox on all of these degenerates, along with an especially nauseated “no thank you.”

I am horror-struck at the destructive power of my disease, which knows no bounds and defies any attempts to arrest it. This thing is Godzilla, and my life is Tokyo. It doesn’t help that during the last few months I’ve been hit with a series of flu bugs and other viruses, which are to multiple sclerosis as fine hooch is to a recovering alcoholic clinging to the edge of the wagon. The frightening thing about my getting sick with any kind of bug is that the resulting physical carnage always proves to be a preview of things to come in the not-too-distant future of my disease’s relentless progression. I’ve often surprised myself and others with my stoicism in the face of hurricane MS, but I must admit there have been moments these last few months that have left me scared shitless. Not being able to get myself in or out of bed, control my bladder, or summon up the strength to push a fork through a piece of broccoli are not exactly harbingers of a rosy future. Note to my doctors or any other doctors who happen to be out there: help! And to my disease: an emphatic no thank you!

I am driven to distraction – literally, I can’t sleep – over the abominable tax plan being rammed down the throats of the American people by Congress. I’ve always tried to keep politics off of these pages, but not speaking out against the abhorrent is the worst kind of cowardice. And these tax proposals, as currently constituted, are most certainly abhorrent. Putting aside the fact that they are yet another attempt at supply-side economics, a theory which has never, ever proven successful whenever it’s been implemented – “But, but, Reagan!” I can hear some sputtering, conveniently forgetting that President Reagan raised taxes 11 times after he initially cut them (click here) – what is really unsettling me is the fact that by all objective estimates the current tax proposals will increase the federal deficit by between $1 trillion and $2 trillion (click here, here, and here). This very likely will trigger mandatory cuts to Medicare (click here), and I fear will eventually be used as an excuse for yet another misguided push to privatize Social Security, Medicare, and Medicaid. The combined effects of these changes would leave millions of the most vulnerable Americans – the elderly, chronically ill, and disabled – without the social safety net they so desperately need. There is no doubt that the US is in need of tax reform, and getting through the process will always be as pleasant as a national root canal, but the hyper-partisan tax proposals now on the table should be anathema to all reasonable Americans. So, with all the strength I can muster, I shout “no thanks” to the current version of tax reform. If you agree, call your Representatives and Senators at (202) 224-3121.

I am a horribly disillusioned by modern medicine as it is currently practiced, rife with conflicts of interest and cynical calculations that put profits over people. Due to the explosive growth in the cost and profitability of pharmaceutical drugs, it seems the goal of modern medicine has become treating rather than curing, a model which is great for Big Pharma but sucks elephants for those of us saddled with horrible diseases. The eye-popping amounts of money generated by drugs that treat but don’t cure have insidiously transformed the landscape of medicine from top to bottom. The medical journals, increasingly reliant on Big Pharma monies for their survival, predominantly publish studies favorable to pharmaceutical company interests. These studies are usually conducted by researchers who are on the payroll of the companies whose drugs they are studying. The doctors reading these published studies are in turn very often paid handsomely in the form of shady speaking and consulting fees by the very pharmaceutical companies whose products they prescribe. In any other industry people would go to jail for this kind of crap, but in medicine, where they can perhaps do the most harm, these practices are now considered business as usual. For an insightful article on just how pernicious these shenanigans can be, (click here). So, come this Thursday’s No-Thanksgiving I will include the entire medical establishment high on my list of no thank you’s…

I’ll end my list here due to time constraints, though in my current state of disgruntlement I could easily extend it ad infinitum. No-Thanksgiving day will soon be upon us, and it wouldn’t make much sense to publish this article once the day has passed. I’d ask all who wish to join me in celebrating this new holiday to refrain from throwing a drumstick at your idiot uncle and instead help to grow the popularity of No-Thanksgiving day by providing a list of your own candidates for “no thank you’s” in the comments section of this essay. Come on, give voice to all of your pent-up grievances, grudges, and gripes so that all of your fellow MS curmudgeons can revel in your misanthropic meanderings!

To all my wonderful Wheelchair Kamikaze readers, I wish you a tremendously Happy No-Thanksgiving! And a Happy Thanksgiving to the more well-adjusted among us…

44 comments:

That list of yours pretty much covers everything that I would be not thankful towards. But I would add the deplorable state of skilled nursing facility in America. They have become repressive and stolid gulags owned by corporate vampires, and hawked by bright-faced, millennial Amway salesmen, preying on the physically vulnerable while still in the hospital. It is repulsive, repugnant and reprehensible. They are no longer places for convalescence or recovery... just storehouses of the infirmed to be hidden away from gentrified society and curious eyes, with a thick veneer of strained resentment oozing from overburdened employees. Much help is needed to change the state of affairs. A voice in the wilderness come home to testify.

We wait broken and defeated, and resigned in the belief that there probably is no SNF Buddha,

Point well taken and agreed with. While I think there are a handful of decent nursing facilities around, they are usually priced out of the range of the typical patient. Those of us unfortunately faced with the very real prospect of winding up in a facility one day are left with few good options. Personally, I think I'd rather take my leave then be transferred to such a facility. Some may have a problem with my stating such a preference, but to each his own…

Mark -as usual you are right on the money- I think the fact that you can make me laugh is the greatest thing. I applaud your ability to go mingle with others during this " No Thanksgiving" holiday. I for one can not. I can't be nice to another idiot relative who wishes to give me some advice on a new treatment they have heard of, I can't be nice and say that aunt sues jello cake is good ( it's not) , I can't be quite while idiots who claim to have the same DNA as I say political things that are not based in the factual world, I can't pretend that the important thing is that I am here for yet another year. Instead of showing up at the families house this year we are boycotting the event. No more pretending - I Really don't like those people - family or not. Thanks again Mark - have a great "No thanksgiving"

Actually, I didn't attend any Thanksgiving events this year. It was just my wife and me. At this point, it's becoming a physical impossibility for me to spend all that much time away from home. The bathroom facility issues, among others, keep me increasingly living the life of a hermit. Luckily, I suppose, I'm okay with living – at least in part – a life without the company of others. I'm in complete agreement with your assessment of the action of all of the "idiots", however well-meaning they may be. Aside from a handful of my closest and truest friends and family, I've little patience for the rest of the population…

Yes, absolutely yes to everything you’ve listed. I think I might add the following to my own No-Thanksgiving list: Other people’s reactions to my disabilities, which range from horror to pity to denial. (Favorites from this past year were people asking me how long I thought Ihad to live and telling me that they’re happy to see I’m not in a wheelchair yet, but seriously, I’m not far from it and getting closer everyday. And is the wheelchair wrong if it gave me some independence back?). Also, No-Thanks to the expectations we hold for people, especially those with disabilities, and a big-time No-Thanks to expectations for social and financial obligations at the holidays. No-Thanks to the attempts in Congress to destroy even more fabric of social services in this country by attempting to undermine the ADA. I could go on, but I’m not sure I have even Adderall to sustain me for the rest of the day, if I do.

Yes, compiling a seemingly unending list of grievances can be exhausting. But, also cathartic. I tried to keep in mind, when confronted with some ridiculous comments or other made by a healthy person, how little they actually understand about the situation. The fact of the matter is that most people spend very little time thinking about anybody but themselves, we all tend to live in our own little bubble realities.

Oh, and just a note on your observation about wheelchairs. Yes, being "forced" into a wheelchair is not necessarily a bad thing, as the damned devices lead to the ability to achieve a fuller existence. Before I got my wheelchair I had become close to a shut in, and getting the wheelchair opened up the world to me once again. Unfortunately, due to the disabilities I've accrued in the nine years since I got my first wheelchair, I'm once again largely separated from the world. MS, the gift that keeps on taking…

Mark, I concur. I, like so many of us, am tired of this damn disease. I, either caught a stomach virus or had food poisoning, about 3 weeks ago. What it did to my symptoms, well, it’s funny, because “scared me shitless” contemplating my future, sums it up completely. So, “No Thanks”, to my disabilities, to MS, to having to present a strong front to the world, to faking it, to these thrice damned pharmaceutical companies and insurance companies who don’t give a damn about any of us suffering from chronic diseases (may they soon rot in Dante’s 9th circle of hell). So,Happy No Thanks giving. May there be a miracle in all our futures.

I would say an exuberant “No Thank-You!” to our current presidential administration and cabinet that is eye-ball-deep in the kind of human species clearly hell-bent on destroying the lives and future of not only already marginalized people, but children… through the removal of any hope of access to education, food, shelter, healthcare, clean and healthy environment, employment, or any opportunity. All this in the name of accruing personal mega-wealth, and/or promotion of a very narrow-minded dogma. A dogma that makes the vast generalization that if we are vulnerable or ill, it is because we are valueless or not working hard enough. Not grateful for this “insult on injury” for those of us who could write books on adaptation, innovation, resourcefulness, and courage, who have been tasked with tackling all the deficits of this disease on ourselves and those who interact with us. No, it is not at all about partisan politics. I’ve voted in 10 Presidential Elections and lived through the associated administrations, and I have NEVER seen something like this. It has much more to do with basic human values and survival than politics. So, I’m very thankful for your blogs of honesty, vulnerability, courage, writing skills, anger, positivity, cynicism, hopefulness, knowledge, and questioning because they so accurately portray this crazy rollercoaster challenge that we are all facing.

I am nodding in 100% agreement. The ascendancy of the "takers versus makers" crowd is horrifying, especially when they try to dress up their vile intentions in the guise of populism. And let's not completely leave without fault those who have allowed themselves to be hoodwinked. Anger at the establishment is understandable, even unavoidable. But hitching your wagon to a bunch of blatant conmen is no way to express that anger…

How about just holidays in general. Not the actual celebration portion which I can totally get behind but the day-long eating and entertaining and trying to stay awake in an environment that is too warm (temperature), too loud, too long, and forces me to push through a day where I would normally be resting at home. No-thanks to the struggle of that!

Yes, Tricia, the realities of MS have several years ago forced me to the sidelines when it comes to holiday celebrations. Fact is, I used to love the holidays, and partook of as much revelry as possible. These days I can't even imagine…

The biggie is not having George here. No more memories to make, and I HATE when someone says that my memories will sustain me. It ain't so. Right on with all your rant and how about moral values and integrity ditched for political reasons? And, again, "just choose happy". I'm all in for the Happy No Thanksgiving.Love ya, Hilda

I mourn George's loss along with you. As for the inability to not make new memories, that's one of the truly awful things about having a disabling disease. As the disabilities mount, the memory making machine grinds to a halt. Most of the memories I'm making these days are ones I would truly rather forget… Yes, there are some good moments, so all is not completely lost, but never in my wildest dreams could I have pictured my current predicament. No thanks!

I agree with much of what you are not thankful for. But isnt thanksgiving about setting one day aside to be thankful of "something" in a sea of unthankful days? Arent most days No Thanksgiving already?

What am I thankful for?

That all these women that suffered may finally pave the way for my teenage daughter to live a little better.

That more of us maybe coming together in how bad the current adminstration is no matter where they are from. Maybe we will do something reasonable in the middle of such unreasonableness.

That biogen and genetech were both founded after I was born and knocked old pharma down a few notches and that a new generation of companies will hopefully move things forward. There are sincere and dedicated researchers actively working on groundbreaking approaches. The first gene therapy drugs went into use this year and while it might not help MS today, it might help any number of other things we may all get.

Yes, of course there are always things to be thankful for. This post was written with tongue-in-cheek, at least partially.

Oh, just a word about Biogen and Genentech. At one point they may have knocked Big Pharma down a peg, but they have now become big Pharma themselves. Genentech engaged in all kinds of questionable practices in its development of Ocrevus, and Biogen is one of the big reasons treating MS instead of curing MS has become the entrenched paradigm. If half the money they spent on researching and marketing drugs that treat had instead been spent on finding the cause of the disease, we might be well on our way to curing this damn thing by now. Yes, there drugs have increased the quality of life for many people with MS, but I often wonder if the very success of those drugs has not impeded the quest to eradicate the disease.

I totally agree with you, Marc. I will not celebrate the paltry things that can make me happy, because concentrating on things I still can do simply reminds me of things I cannot do [which is pretty much everything].I think it's shocking the number of men in powerful positions who have preyed on women for years, thinking it's their right to paw and grope and even worse, as if they were entitled. It's good this is all coming out, and that it will change the fabric of society. I have no sympathy for these men losing their jobs, their "good" names, their futures.As for the government and the no-medical system, yes to everything you said.Thank you for your blog – you are an inspiration.Kathy

Yes, the list of things that I can do seems to be shrinking daily, and is getting to the point of making a mockery of any attempts at diminishing it. There is no good in wallowing, however, so I don't allow myself that "luxury", but facing the reality clearly and stating the obvious every now and then is a necessity, I find. It's even a bit cleansing…

Marc,You do such a good job at putting on paper (so to speak) what so many of us think and feel and live almost everyday. Just knowing someone else "gets it" makes us not feel so alone. Thank you, thank you, thank you!!!And by the way - how DO you get in my brain and say so many things I am thinking???

I agree with Laura and Daphne... you have articulated my disgruntlement with this holiday succinctly. It's good to know I'm not the only one feeling this way, as I am in the midst of so many who are relentlessly insistent on putting on a phony smiley face for the occasion.I am looking forward to your Christmas rant... it will be the only thing I am looking forward to!Holiday season, my ass. Bah humbug.

Will have to see about a Christmas rent. I hate to spend all of my time dwelling in the negative, and sometimes writing something a bit uplifting, even if I'm not feeling especially uplifted at the time, helps keep the spirits afloat. It's almost like a form of therapy, attempting to have life imitating art. Not that anything I write on these pages is art…

Am I allowed to comment here ... without signing anything ... or paying something ... or inventing a secret password or handshake??? If so, please allow me to say how THRILLED I am to read your elegant, lacerating writing ... Maybe this is the one good thing about having MS ... that it leads a person to you? Anyway, please allow me to thank you for No-Thanksgiving, and your delicious attitude and insights.

Geeez, I'm ridiculously thrilled that you replied! I'd love to do this all day long -- reply, answer, reply -- but I don't want to be greedy! And, as you say, napping is an extremely demanding obligation now ... which brings me to a question I would love to ask you, but it has nothing to do with No-Thanksgiving. ... May I? Or is this not the forum for that? My question has to do with dreaming -- or the lack thereof -- with MS. ... If you give me the go-ahead, I'd love to ask/discuss that with you. ... Anyway, your writing is absolutely dazzling ... I'm slowly working my way down your posts -- and what joy! Oh, to hell with No-Thanksgiving -- thank you (again)!!

I'd certainly be happy to try to answer any questions you have about dreaming, but this probably isn't the place. Why don't you email me: WheelchairKamikaze@Gmail.com

I try to answer as many emails as I can, although sometimes it might take me a while, and a few slip through the cracks.

As for dreaming, I find I dream quite vividly and almost lucidly at times. Thinking this may have to do with some of the MS meds I'm taking, and also the relative lack of sleep I'm experiencing probably enables extra powerful dreams, packed into the limited time I have to dream them. If that makes any sense…

Great to have your email, Marc, thank you. It may take me awhile to send one -- emails are daunting these days -- but I'd love to try. ... Meanwhile, I'm very happy to hear your dreams are still vivid ... that in itself gives me hope. Anyway, I'll email soon ... but now i must get back to reading "On Friends, Old and New" ... what joy!! Dammit, thanks AGAIN!

Man, that drives me insane. If I see one more celebrity with MS trotted out to put a happy face on the disease my television will be in danger of being pierced by a heavy object. Please, let's see some of the uglier side of the disease, and then maybe people will understand that the status quo is NOT acceptable!

Marc - boy, did you hit the nail on the head! From the perfect response (from a male perspective!) regarding the complete insanity of these powerful men. I nearly threw up when I heard about Charlie Rose; it's baffling. And Big Pharma? Well... no more words are needed. The 'tax' proposal? I'm a PPMS'r with 23 years in the game and not a dollar left. So, I'm looking at cuts to Medicare and Medicaid with quiet panic in my stomach. I'm with you - 'NO THANKS". Except a big thanks to you for putting it all into words. Well done!

I was in the UK for Thanksgiving and I'm glad I didn't have to deal with Thanksgiving--either being the spectre at the feast or feeling like a surly grumpkin holed up happily with my wife and ignoring the date.

Marc, yes. Too all of it.

To your list I'd add being not-thankful for all those who like to break things rather than build things: politicians, harrassers, bullies, thieves, and vandals of all stripes. It particularly hurts me when I watch fools breaking countries. It's been heartbreaking to watch the last three decades in Africa; now it's heartbreaking in the UK and the US. I'd say I'd weep for us all, but I'm out of tears.

1. Awful, awful people who are able-bodied. They don't deserve it.2. Hearing or reading the words 'wheelchair bound", as if it's the worst fate imaginable.3. Not being able to walk in the woods or on the beach.4. Getting run into 10 times a day by people looking at their phones.5. Hearing things like "I read that MS is caused by dogs! Maybe you should get rid of yours." Yes, someone actually said that to me.6. Being "brave".

We need an ACTUP MS group like ACTUP for AIDS. They got things done! We have to do it ourselves as we are victims of the disease and Big Pharma and fake supporters. We are victims of elebrities who hawk the drugs that do not cure us. The reason I sign as Anonymous is I have to for fear of loosing work.

Lets do this! ACTUP MS! I hate the color orange, I am tried of being "brave" Thanks Marc. Please help get the word out. ACTUP MS!

I am certain the vast majority of us that have been forced to stop working wish we could still do so. Working & paying taxes (!) should be our new argument for finding a cure. Being "warehoused" because of MS isn't helping anyone. If we weren't sick, we wouldn't be the dumb slackers Paul Ryan hates. So finding a cure will help the economy & stop our bitchin' about drug costs, health care, & this horrible disease. I hope this argument makes sense. I am more than annoyed because my "specialist" said there is nothing more she can do. Even if there was, I lost my insurance when I had to quit my teaching job, so I couldn't afford "treatment" anyway. So repeat after me - get a cure! get a job!

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...